چکیده انگلیسی

Abstract
Studies have shown that stigmatization is linked to lower quality of life; however, only scant research has examined the association between family caregivers’ internalization of stigma (affiliate stigma) and their subjective quality of life (subjective well-being, SWB). Furthermore, studies have rarely examined this association via comparison between caregivers of individuals with different developmental disabilities in addition to examining the influence of psychosocial protective factors. These were the aims of the current study. Family caregivers (N = 176) of individuals with autism spectrum disorders (ASD), intellectual disabilities (ID), and physical disabilities (PD) completed a self-report structured questionnaire including scales measuring SWB, affiliate stigma, burden, positive meaning in caregiving, social support and self-esteem. Results showed that SWB of family caregivers was below the average normative level and especially low for caregivers of individuals with ASD. The strongest predictors of SWB were caregivers’ self-esteem, social support, positive meaning in caregiving, and affiliate stigma. Furthermore, an interaction was found between affiliate stigma and diagnosis, showing that among caregivers of individuals with ASD, greater levels of stigma were associated with lower ratings of SWB, whereas such an association was not found among caregivers of individuals with ID or PD. Findings from this study point to the importance of supporting caregivers across the life-span in order to decrease stigma, improve social support and self-esteem and improve SWB. Further, findings point to the need to respond differentially to the various developmental disabilities.

مقدمه انگلیسی

Introduction
A great deal of research has shown that raising a child with a developmental disability (DD) strongly impacts family caregivers and especially parents (Samuel, Rillotta, & Brown, 2012). Early research has shown an association between caring for a child with a DD and chronic sorrow among the parents (Olshansky, 1962). While most research has moved away from the perception of chronic sorrow, it is nevertheless recognized that the economic, psychological and social burden of caring for a child with a DD may strongly affect the quality of life (QoL) of the parents (Isa et al., 2013). Given that families are recognized as crucial for the well-being of children with disabilities, researchers, service providers and policy makers have recognized the importance of supporting them and of providing the means to have a positive QoL (Samuel et al., 2012).
QoL is a broad concept which can be assessed through either objective or subjective measures. Objective measurement of QoL includes, for example, objective circumstances of living, number of friends and degree of physical disability (Cummins, Mellor, Stokes, & Lau, 2010), whereas the subjective dimension of QoL, which has been referred to as subjective well-being (SWB), includes, for example, the degree of perceived happiness or satisfaction. Theorists and researchers recommend focusing on the subjective aspect of QoL (Cummins et al., 2010), mainly because it allows for a global and comprehensive examination (McGillivray, Lau, Cummins, & Davey, 2009), which cannot be attained with more objective measures, for example, the International Classification of Functioning, Disability, and Health (ICF; World Health Organization, 2001).
SWB is defined as a normally positive state of mind that involves the whole life experience and encompasses life satisfaction and happiness (Cummins et al., 2010). Although subjective, a psychological/neurological system of SWB homeostasis has been posited in which people strive to maintain normal levels of well-being even under difficult conditions, with an average set-point of 75 on a 100-point scale (Cummins, 2000 and Cummins et al., 2010). SWB may drop below this set-point range in situations in which the level of challenge to SWB becomes too great (Cummins et al., 2010).
Several variables have been found to be related to the QoL of caregivers of individuals with disabilities. These include challenging caregiving demands (Larson, 2010), burden from insufficient family support, health status of parent and household income (Lin et al., 2009). However, one variable which has rarely been examined in relation to QoL of caregivers of individuals with DD is caregiver's affiliate stigma.
1.1. Stigma, affiliate stigma and quality of life
Stigma is conceptualized as a set of prejudicial attitudes, stereotypes, discriminatory behaviors and biased social structures endorsed by a sizeable group about a discredited subgroup (Corrigan, 2000). Three over-arching types of stigma have been conceptualized. The first and most well-known type of stigma is public stigma, which focuses on the attitudes of the general population toward stigmatized persons (Link, Struening, Rahav, Phelan, & Nuttbrock, 1997). The second type of stigma is self-stigma, which focuses on individuals’ internalization of society's negative views toward themselves (Corrigan & Watson, 2002). The third type of stigma is family stigma, which is the stigma experienced by individuals as a consequence of being associated with a relative with a stigmatic mark (Goffman, 1963 and Larson and Corrigan, 2008).
Lately, Mak and Cheung (2008) have differentiated between the stigmatic perceptions of the public about family caregivers (i.e. family stigma) and the internalized stigma of these family members, which has been termed affiliate stigma. Thus, affiliate stigma focuses on the extent of self-stigmatization as experienced by associates of targeted individuals and the corresponding psychological responses of these associates.
Research regarding affiliate stigma and SWB is scant. Most available literature concentrates on the more general construct of family stigma and focuses almost exclusively in the area of mental illnesses, showing that higher awareness of stigmatization in family members of persons with mental illnesses is associated with lower QoL (Angermeyer et al., 2004 and Dinos et al., 2004).
The current study intends to expand this narrow body of knowledge by examining the construct of affiliate stigma among family caregivers of individuals with DD and its relationship to their subjective evaluation of QoL.
1.2. Developmental disabilities, stigma and SWB
Developmental disability is defined as a severe and chronic disability which originated at birth or during childhood, and which is attributable to a mental or physical impairment or to a combination of both. Further, it is manifested before the individual attains age 22, is expected to continue indefinitely and substantially restricts the individual's functioning in several major life activities (Developmental Disabilities Assistance and Bill of Rights Act, 2000).
The aim of the present study was to examine the relationship between affiliate stigma and caregivers’ SWB among family caregivers of individuals with three types of DD – intellectual disability (ID), autism spectrum disorders (ASD) and physical disabilities (PD). This examination is important as it has been shown that disability type and history of aggressive behavior play an important role in attitude formation (Tsang, Chan, & Chan, 2004). Indeed, several studies have consistently shown that more positive attitudes are reported toward people with PD than toward individuals with mental disabilities (Cook, 1998 and Wong et al., 2004). However, to the best of our knowledge, it remains to be examined whether these differences are internalized among caregivers and translated into affiliate stigma.
Indeed, in the area of DD, only a few studies have examined the association between family stigma and SWB. For example, Chou, Pu, Lee, Lin, and Kroger (2009) in a study assessing 416 caregivers of adults with ID or mental illness, found that caregiver's feelings of shame had an adverse impact on their QoL, with a stronger effect among carers of adults with mental illness. The authors suggested that this effect might be the result of ID eliciting more sympathy than mental illness. A different study conducted among 188 caregivers of individuals with ASD in China (Mak & Kwok, 2010) showed that experiencing stigma led to its internalization, which was negatively correlated with caregivers’ psychological well-being.
Despite the importance of previous studies, only three (Chiu et al., 2013, Mak and Cheung, 2008 and Mak and Kwok, 2010) examined the specific concept of affiliate stigma; a fourth (Chou et al., 2009) examined related notions, such as shame, but did not utilize the specific concept of affiliate stigma. Moreover, two of these studies examined affiliate stigma, but not its association with SWB or QoL (Chiu et al., 2013 and Mak and Cheung, 2008). Furthermore, all these studies were conducted solely in China or Hong Kong and focused on ASD (Mak & Kwok, 2010) or ID (Chou et al., 2009), without providing a comparison between DD groups. Finally, most of these studies did not examine the extent to which psychosocial protective factors can moderate the association between affiliate stigma and SWB.
The present study intends to address each of these limitations by: (1) examining differences in SWB and affiliate stigma between family caregivers of individuals with different types of DD; and (2) examining the extent to which psychosocial protective factors moderate the association between affiliate stigma and SWB.
1.3. Subjective well being: the role of psychosocial moderating factors
Five psychosocial moderating factors were selected for this study. The first, religious affiliation, was selected given that religious faith has been found to be helpful in recovery processes (Webb, Charbonneau, McCann, & Gayle, 2011) and, thus, may also be helpful in dealing with stigma. The present research focuses on Jews from Israel as there are different levels of religious observance among them (Arian & Keissar-Sugarmen, 2012).
The second moderating factor examined in this study is burden. Previous studies conducted within the framework of different disabilities and diseases have shown significant and positive associations between stigma and caregiving burden. For example, studies have found stigma to be related to burden and distress among mothers of children with a chronic disability (Green, 2003), as well as among parents of children with ID (Baxter, 1989 and Mak and Cheung, 2008) and cognitive delays (Shin et al., 2006).
The third moderating variable examined was positive meaning in caregiving. This variable has been selected because meaning-making has been found to be a central aspect of coping with adversity (Frankl, 1984). Furthermore, a recent study has found that caregivers of children with ASD reported that beyond burden and other negative outcomes, raising a child with a DD was also associated with positive influences (Meyers, Mackintosh, & Goin-Kochel, 2009). Thus, it seems important to examine the role of this variable in the association between affiliate stigma and SWB.
The fourth moderating factor included in our study was self-esteem. Self-esteem relates to a sense of self-respect, worthiness, and adequacy (Rosenberg, 1979) and is conceptualized as an intra-psychic trait that is related to optimism (Fayed, Klassen, Dix, Klaassen, & Sung, 2011). Indeed, studies in the area of physical disabilities have shown that negative self-esteem is associated with lower well-being by internalizing stigma, exclusion, and devaluation imposed by society (Hughes et al., 2004 and Nosek et al., 2003). On the other hand, positive self-esteem contributes to higher QoL (Duvedevany, 2010 and Kermode and MacLean, 2001) through personal empowerment and disability activism (Hernandez, 2005). Furthermore, self-esteem has been found to be associated with better psychological health among caregivers of individuals with disabilities (Raina et al., 2005).
The final moderating variable examined is social-support and network size. The contribution of social support to QoL is explained thru the receipt of messages of empathy, encouragement and validation (Chou et al., 2009 and Wills, 1998). Low social support has been found to predict higher levels of perceived stigma (Shin et al., 2006). Further, in relation to affiliate stigma, Mak and Kwok (2010) have found that social support moderated the influence of affiliate stigma on caregiver psychological well-being.
Fig. 1 presents the theoretical model that was examined in the present study. The model examined the association between affiliate stigma and caregiver SWB as moderated by the five psychosocial moderating factors described above. As can be observed, caregivers’ and children's background variables were hypothesized to be directly associated with SWB. Finally, as a previous study (Werner & Shulman, submitted) showed that child's gender and diagnosis were associated with affiliate stigma, these were also examined in the model.
The theoretical model.
Fig. 1.
The theoretical model.
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In sum, based on the literature described above, it was hypothesized that: (1) a negative association will be found between affiliate stigma and SWB among caregivers of individuals with DD; (2) the negative association between affiliate stigma and SWB will be strongest among caregivers of individuals with ASD and weakest among caregivers of individuals with PD; (3) a stronger religious background, higher levels of positive meaning in caregiving, of self-esteem, and of social support will moderate and reduce the negative association between stigma and SWB, while higher levels of burden will increase this association.